Lack Of Support For Millions Of Dementia Patients

October 1, 2009

A report on Thursday over the ethical dilemmas of dementia said that millions of people suffering with the brain-wasting disease are often left without care or support until their illness reaches a crisis point, Reuters reported.

The British medical ethics group that authored the report criticized health authorities for failing to take a broader view of dementia and called for more focus on easing the daily problems it poses for sufferers and their caregivers.

An estimated 35 million people around the world will suffer from Alzheimer’s disease or other forms of dementia in 2010, according to a prediction from Alzheimer’s Disease International.

Experts project that number will almost double every 20 years, to 66 million in 2030 and more than 115 million in 2050.

Tony Hope, chairman of the Nuffield Council on Bioethics’ working party on dementia and a professor of medical ethics at Oxford University, said people can often get help with their medical problems, but there is not the same help available to deal with the ethical and moral problems they face.

A comparison between cancer care 20 years ago and dementia care now was highlighted in the Nuffield report, which said health authorities needed to refocus their approach to recognize dementia’s huge impact because of the rapidly aging populations.

“It is not considered acceptable to make people with cancer wait until crisis point before getting support, and people with dementia should not have to wait either,” it said.

Rhona Knight, a family doctor and member of the committee, told reporters it is often the little things that are the most distressing.

Caregivers of dementia patients often needed support in deciding tough decisions on whether to lie to loved ones to get them to cooperate with treatment, or whether to lock them in the house or restrict access to appliances or vehicles for their own safety.

Alzheimer’s, the most common cause of dementia, and other forms such as vascular dementia, which is caused by clogged arteries in the brain, currently have no effective cures.

While drugs can relieve some of the symptoms, many patients lose their memories, their ability to care for themselves and their understanding of the world.

However, the key to improving care is changing attitudes and ensuring care is there early, according to the British report.

The report added that people should have support from the time they start to worry about dementia symptoms, and they should not have to wait until the illness progressed to a point where only drugs can help.

The growing network of “Alzheimer Cafes” spreading from the Netherlands across Britain where people with dementia and their caregivers can meet and talk to other sufferers and health or social workers was cited in the report as an example of good practices.